I FINALLY had my adrenal test come back

Discussion in 'Fibromyalgia Main Forum' started by desertlass, Apr 21, 2007.

  1. desertlass

    desertlass New Member

    and FINALLY something was not normal!! What a relief.

    I am so low, low, low-- the test was even done on a "good" day.

    Most gratifying of all was to finally see in black and white that being awake all night and being in a coma during the day (circadian rhythm turned around completely backward) is because like so many of us:

    my cortisol levels are the opposite of what they should be-- low in the morning and high at night. I just want to put the numbers on a huge billboard and say,

    "No, my CFS is NOT because I sleep too late and then stay up too late like a baby who has its days and nights turned around-- meaning-- 'if you would just sleep like a normal person, you wouldn't feel so bad...'"

    I think I had adrenal burn out when I was 19 or 20. I have waited seventeen years for this moment!! I will not even LIST the number of conventional and alternative people I have seen.

    ERGGG... Frustration along with victory! Bittersweet. If I have a guardian angel, then she must have CFS, too, poor thing, because this sure has taken a LOOOONNNGGG time!!

    Just wanted to share my "victory rant" for now.
    Thanks,
    Lisette
  2. monalisa3

    monalisa3 New Member

    I'm happy for you to finally have an answer in black and white. What tests did you do to determine the adrenal problem and how will you treat it?
  3. Slayadragon

    Slayadragon New Member

    Hi Lisette,

    My adrenals were the first thing to come out abnormal for me too. Reversed cortisol like you describe, plus low DHEA.

    Increasing the DHEA to the middle of the normal range several months after I got sick was a breakthrough moment for me. It didn't make me all better, but it moved me from a suicidal 10% to about 40% on that scale sometimes used for CFS.

    Sorry it took you so long though.....

    Best, Lisa
  4. Aberlaine

    Aberlaine Member

    Lisette,
    It's always such a relief to find out what's wrong with us. It gives us a direction we can follow to hopefully feel better.

    I think I have ME/CFS and will try to convince my PCP to do the appropriate tests to confirm my suspicions.

    Please tell us more about the treatments you're going to try.

    Gentle hugs,
    Nancy
  5. SherrieTeacup

    SherrieTeacup New Member

    Hi Lisette How do they do the test and what meds do you take for it? Also what kind of Doctor did the test for you. So glad that you found something to help you.
  6. desertlass

    desertlass New Member

    Lisa, my DHEA is on the lowest number for normal, and everything else was below normal, I believe. That is encouraging to me that straigtening out this problem was a help to you. I've been thinking that if only I could "get a leg up" in some area, I might be able to start doing all the other necessary things like juicing, gut repair, detox, sleep hygiene, etc.

    My doc ordered a cortisol saliva test through ZRT labs. It is not covered by my insurance, but I can deduct it from my husband's medicals savings account. I believe that you can get this test from a compounding pharmacy, or order one from their online site. If you do a search on here, other labs that other people have used might show up, too.

    I am guessing that this lab works with Dr. James Wilson, whose treatment plan is outlined in his book, "Adrenal Fatigue: The 21st Century's Stress Syndrome". I haven't read this book. There is a questionaire, and coupled with the lab results determines what the course of treament will be, using his proprietary blends. I don't know yet if this is going to work, I'll have to see. There is a schedule and other suggestions that go with the supplements.

    I had looked into this "Wilson's Syndrome" before because of a book called "Prescriptions for Nutritional Healing" by the Balchs (which Lisa mentioned, too.) However, when I went to his site, let's see, over ten years ago, this whole medical treatment by internet thing was new, and I think he was having some legal issues, so the site was down. I hit a brick wall with that, which was bad timing for me. :(

    Having four doctors in my extended family did not instill any confidence in me that he was not some quacky wannabe. You know-- a doctor on the WEB? A new, catch-all syndrome? A test using saliva through the mail? But he seems to be more mainstream in the complementary practice world, and I wouldn't be surprised if these test kits aren't available in certain health food stores by now. Mine was around $120.

    Because I'm working with an osteopath, they want to first do a liver cleanse using Metagneics UltraClear and AdvaClear. We're guessing my liver is not in good enough shape to expect the adrenal support to work as well as it could. I can't tolerate most meds, caffeine, chemicals, etc.

    So, first I will be doing a search on liver cleansing to see if this is the best way to go. I'm still looking at the methylation protocol, as well. It is making about 60% sense to me right, now. I keep having to revisit it.

    It is so thrilling to finally have some information to work with, and a board like this to bring it to, for suggestions.

    I only have one test result remaining, and that is for heavy metals.

    CFS/FM has had me for a long time, but now I have it in my sites. It had better look out.

    One more small step forward...
    Hoping to add it to the long journey toward health for us all,
    Lisette
    [This Message was Edited on 04/22/2007]
  7. Slayadragon

    Slayadragon New Member

    Hi Lisette,

    Hormones have been by far my "favorite" CFS treatment. I've gotten huge immediate benefits from everything I've tried, and without any "work" on my part. Considering what a pain all the other CFS treatments (e.g. yeast, viruses, food allergies) are, it's a nice change of pace.

    By far the best information that I've gotten about the adrenals is in the book "Optimal Wellness" by Ralph Golan M.D. For some reason, I've not found a lot of really informative materials about the topic elsewhere. I still go back to that book and look things up, even though I've been thinking about adrenal health for a long time.

    Treating the liver is never a bad thing, but I've never heard before that having it in tip-top condition is necessary before treating adrenals. I hope you don't have to spend too much time on it before addressing the adrenal situation, since (as you say) getting something in order may make it a lot easier to pursue other things.

    I got a whole bunch of things at least somewhat under control during the first six months of my illness---yeast, food allergies, amalgam removals, mercury detoxification, replacement of several different bioidentical hormones (progesterone was another important one for me). If I hadn't started with the DHEA (which I took in pure form), I wouldn't have had the energy to pursue any of the others.

    I do think the liver needs to be in good shape to do the methylation stuff. Can you tolerate non-denatured whey protein? I've found that by far the best treatment I've tried (except Traditional Chinese Medicine herbs) for my liver, although obviously a lot of people with CFS can't use it.

    Please write back and report on how things are going as you begin to treat. I'd like to know.

    Best, Lisa

    [This Message was Edited on 04/23/2007]
  8. butterfly8

    butterfly8 New Member

    Congratulations.

    I know exactly how you felt. I felt that way when my adrenal tests came back showing problems.

    I wish you well in your recovery. (think positive)

    Although the treatment may not be fast, you have something to focus on. It has taken over 2 years to find something to fix my cortisol levels: firstly, because I insisted on trying adrenal cell extracts before the cortate (they didn't work for me) and secondly, because I proved to be extremely sensitive to the cortate and it has taken a long time to buiold up my cortisol levels into the normal range. But, it is/will be worth it.

    You go, girl!!!!!!!!!!!
  9. Elisa

    Elisa Member

    Congratulations...I sure hope this is a big piece of the puzzle for you...or the whole puzzle - it would be great to hear!!!

    Best Wishes,

    Elisabeth
  10. Waynesrhythm

    Waynesrhythm Member

    Hi Lisette,

    I’m really happy for you. Based on my own experience with Cortef, I’m optimistic that correcting your low cortisol levels will truly allow you to "get a leg up" that will allow you do even more good things for yourself.

    Like Lisa, I’m a bit perplexed that your doctors would forego the adrenal support until you completed a liver cleanse. I would tend to think that having adrenal support would optimize a liver cleanse. I guess I may have been a lucky person to find my optimal dosage within a couple of weeks.

    Anyway, wishing you well. So good to hear your good news. Your optimism is almost contagious.

    Best, Wayne[This Message was Edited on 04/23/2007]
  11. Slayadragon

    Slayadragon New Member

    Hi Lisette,

    Another note:

    My experience was that bioidentical DHEA (it needs to say 'micronized' on the bottle) was far better at addressing my deficiency at the beginning than was adrenal extract.

    After my adrenals got closer to being well, the adrenal extract became helpful.

    If you have low DHEA and somewhat low cortisol, fixing the DHEA first might be a good first step. Cortisol is trickier, and if you have enough DHEA you might not need as much.

    Again, the Golan book makes the whole thing a lot clearer. I think it's highly worth the $20 investment if you're working on this particular issue.

    Spending two years on it (as butterfly8 said she did) would be really frustrating. I got the whole thing totally under control in literally two days.....

    Best, Lisa
  12. NyroFan

    NyroFan New Member

    Lisette:

    Congratulations! Sometimes we have to wait and wait and wait for the correct diagnosis.

    I am so happy for you.

    nyrofan
  13. desertlass

    desertlass New Member

    Well, regarding the whole liver thing-- the adrenal discussion with the nurse practitioner got derailed by me. I had spoken previously with the doctor about my current meds not working as well as they used to.

    I feel like I need THEM to be in good working order, if I'm to get through some of the next months of experimentation and detoxing. So, we decided to do a one month cleanse.

    We're not putting off the adrenals, just making sure that I have as much pain and nerve support as possible, since I have never had a good experience with any hormone adjustment, yet. I tend to get strung out by anxiety, which makes me nervous to even CONSIDER going back to that again.

    Whatever happens, I'll let you all know. But, I warn you, I'm slow by nature. And apparently all the doctors I picked are too. ;) At any rate, after this long and after so many mishaps, I'm not going to burst out of the gate and just fling myself at the first thing I see offered. Maybe AdvaClear is about as good as tipping down Pixie sticks, who knows?

    Dr. Nolan can still be found in the Amazon, I presume?

    Thank you all beyond words for your kind concern and support. I won't be a stranger. But, you'll all have to let me know if I GET stranger (than I already am). ;)
    Lisette
  14. deb_46

    deb_46 New Member

    When you get started on cortef you will be amazed at the difference, it was like waking up from the dead for me.

    Do you have any hypo symptoms? Hypo and adrenal go hand in hand the majority of the time, usually hypo first that goes untreated which leads to adrenal fatigue. That's what happened to me.

    Congrats again, I know what a relief it is to finally have a firm diagnosis as to why you feel like crap.

    Deb